The Alchemy of Friendship

I've been thinking a lot about friendship lately.

About new worlds...only made by the intersection of two people's paths at just the right moment.

You have to be ready.

The other person has to be willing.

Some sort of magic happens and like a chemical experiment...

where there were once two separate chemicals, now there is unity...

friendship.

Joy.

Comfort.

Supreme comfort.

The ability to just be yourself without pretense and let the friend be the same.

Such a gift.

It can't be orchestrated.

It can't be forced.

We can wish for it.

Pray for it.

Dream about it...

but like a kite catching air,

it has to have just the right angle,

just the right amount of wind,

the exact moment when majestically it soars.

*****

When you have a child with a disability, you wonder in the dark of night if that child will be able to connect and have a friend...

not someone who is nice to them.

That's too easy.

No, you dream of something deeper.

A genuine enjoyment of each other.

Shared secrets.

Inside jokes.

Laughter and lightness woven with acceptance.

Like a unicorn, this kind of friendship seems mythical.

Is it possible?

The answer is yes.

Patrick and Christopher at 6th grade camp.

These two have been friends for a long time.

They don't need much.

They find ways to laugh and have fun almost immediately.

There is a realness and a genuine joy with each other that is palpable.

There's no awkward tension of trying too hard...or wanting it too much.

No, there's just a couple of goofballs.

Sunken into the comfy couch of friendship.

Patrick and Christopher were in the same class from first grade to sixth grade.

Then, in 6th grade, Christopher moved to another school.

They were still friends but for 7th and 8th grade they rarely had a chance to connect.

This year, in 9th grade, Patrick moved over to the same school as Christopher.

They picked up where they left off.

Sharing lunch time and laughs.

I haven't been around these two really at all...

I just hear the snippets of their friendship at the dinner table.

But a few weeks ago, I had to drive both of them to a week-end adventure two hours away.

Listening to them talk in the back seat was transformational for me.

I never had the opportunity to become friends with someone with a disability when I was a kid.

I really can't imagine it.

I try and picture how I would have been...

would I have slowed down and taken the time to really see this person?

I cringe and know that the answer sure feels like no.

How did Christopher know to do this?

Are you born with a compassionate heart...

or do you build it like a drip sand castle

drip by drip

just by being submerged in a world of difference and diversity?

Like friendship, I think it is a magical alchemy...

the heart is ready and the opportunity bubbles up creating the solution needed for friendship to form.

I know this much: inclusion is part of the answer.

*****

In the back of the car, two 15 year olds talk about driving and getting licenses.

Christopher reveals that he already has his drivers' permit, 

the first step to getting a California drivers' license.

Patrick gives him the appropriate oooh's and aaah's...truthfully impressed.

He doesn't press further...but Christopher does.

He asks Patrick if he has the app on his phone to take practice written tests for driving.

When Patrick reveals that he doesn't have the app, Christopher downloads the app onto Patrick's phone and then proceeds to go through a sample test with him.

This quote:

"Really, Patrick, you can totally do this. Most of the answers are just common sense. I'll help you."

made my inner Rocky run up the steps and dance with my inner Mother Teresa...

who does this??

The answer:

a friend.

A real friend presumes competence.

A real friend supports and encourages dreams.

A real friend shows the path.

A real friend believes in you.

A real friend takes a selfie and posts it to Instagram and watches the likes pile up...

Well, I think there can be some debate on the last bit...

but this pic is the essence of real friends.

Comfortable.

Companionable.

Caring.

These two have reignited their friendship...the world is better for it.

Just like the two individuals, this moment in time will never come again.

In the Japanese culture it is called Ichigo Ichie. 

One opportunity. One encounter.

We must cherish the chances we're given for friendship.

Seize them.

Reach out.

Laugh and linger.

Try harder.

Wait and wait and wait...and reach out some more.

Friendship is too important to let slip away.

We can't explain it...

or analyze it...

but we know it's no myth and all magic.

Today I'm grateful for big hearts and kind friends,

authentic and real in their relationship.

Thank you for showing me how it's done.

Thank you for sharing a bit of the magic with me.

Have Courage, Be Kind and Find a Little Bit of Magic...

This week-end was World Down Syndrome Day.

I almost always think of the new mom...

the pregnant mom...

the twosome that suddenly turned into a threesome and then got a big surprise...

Down Syndrome snuck into the room.

"Go away, right now." They want to scream.

"We want our perfect baby."

"We want a trouble-free childhood."

Milestones met easily. 

No difficult conversations.

No messy situations.

But Down Syndrome is stubborn...and it will not be leaving the party.

Those new parents will hear all of the difficulties up front.

A doctor or geneticist will think they are being kind and they will lay out as if it were the assortment of utensils used in Downton Abbey's famous dinners, the numerous potential difficulties of life with Down Syndrome.

I often wonder how parents of typical infants would react if they too were seated 

and forced to listen to all of the difficulties that their children may face.

What would they say?

Their faces squinty-eyed searching their tiny treasure for any sign that the potential things listed might be present right this very minute or showing up at any moment.

*****

I get it.

I was you once...searching for other families with three children and looking at them longingly.

Why isn't my family like that?

Get this interloper out.now.

On this day, 363 days until we have a chance to celebrate Down Syndrome with the world again,

 I'd like to offer up some truth.

I've been hanging around people with Down Syndrome on a regular basis for fifteen years.

Down Syndrome is not a rude guest.

Down Syndrome provides you with something you may never have had before...

glittering eyes.

Down Syndrome is full of magic...

so unlikely...

so improbable...

that people discount it and never notice.

If you are pals with Down Syndrome, you see miracles. full fledged miracles. frequently.

You see the tenderness and joy that is so raw and so real that it takes your breath away.

You see the power of hope.

You witness just how powerful love really is.

You see people dealing with adversity in a humble, stoic way. 

They just deal with it. Don't belabor it. 

Courage in every way.

You learn how to live in this moment right now...not rehashing the past or planning the future.

Right now.

Turns out that's what matters.

It just so happened that World Down Syndrome Day aligned with Patrick's 

one and only basketball tournament with Special Olympics.

He got himself up and ready and filled up the water bottle.

We listened to songs to pump ourselves up.

We put our game face on...

only that's not a thing in Special Olympics because when you walk out, 

your team-mates are loose and ready...and oh so happy to see you.

Cheering for you, actually.

They might be wearing fox ears.

They could be needing a new jersey.

They might be talking to themselves...or have anger issues.

But the rag tag group is a team and they are happy for the opportunity.

Watching Patrick play basketball, none of it is easy.

The player whose vision prevents him from being able to dribble in any way.

The player who likes to defend a little too enthusiastically.

The player who has a sweet shot from only one tiny spot on the court...but when it gets up...when it has a chance to fly,

man, it's nothing but net.

In these games, every point is hard won.

Nothing comes easy.

Even taking the ball inbound can be tricky.

The scores are low -- but the spirits are high.

Miraculously, Patrick's team won their second round of games and they would be playing the 

Gold Medal Game!

We came home, gathered the troops and went back for the game.

The stands were full.

The players were ready...nothing had changed.

No stressful coaching talks.

No pressure from the other players or the parents to perform.

Just another game.

The teams were very evenly matched.

There were miracle shots on both sides.

There was joy and acceptance and fun -- cheers from the crowd and high fives from friends.

Double overtime.

Down from behind.

Patrick's team recovers and impossibly shoots to win, with seconds left.

It was a Gold Medal Moment.

I squished that moment in my heart. 

Tried to feel it and know its smoothness.

I had my parents cheering, my children cheering, my husband cheering  -- 

I wanted to transport any new parent and 

like the Ghost of Christmas Future show you what you are in for...

Down Syndrome is a glue...

it's sticky and attracts the most amazing people.

People like Patrick's Special Olympics basketball coach who on his first day of spring break as a junior high teacher of students with disabilities is front and center organizing the groups and passing out jerseys.

People who have at their core a deep understanding of what matters.

What's real.

What's important.

That glitter glue attracts people who are:

Selfless

Honest

Trustworthy

Dependable

Loving

Optimistic

Encouraging

Problem-solvers

People who get stuff done.

*****

Our family went to see the new Cinderella movie.

It's a beautiful escape with a wonderful message:

Have courage, be kind and find a little bit of magic.

Those words are my truth.

That is the definition of Down Syndrome:

courage, kindness, magic.

New momma, you are in for some serious magic.

But you must take your glittering eyes and really see.

In the most unlikely of places,

with the most unlikely of people,

you will be blessed.

Blessed by love, kindness, friendship and the clarity to see what counts.

I wish for you not just a Gold Medal World Down Syndrome Day,

I wish for you a glittering, gold medal Down Syndrome life.

A wonderful life.in.every.way.

Welcome.

My Hero

"Heroes don't look like they used to, they look like you."

--Nothing More by Alternate Routes

One of my heroes is Sue Buckley.

You probably have never heard of her.

She's an older woman, slight in stature, well-spoken and honest.

Gut level, clear and sometimes brazen.

She's also British.  

So whatever she has to say, no matter how hard to swallow, feels like it has a spoonful of sugar to help it go down.

Her intelligence, her drive and her careful research

 have reformed education for people with disabilities across the UK.

Yes, folks, that entire country places their students with disabilities in regular ordinary classrooms first.

Support is given.  Intention and careful planning go into it. 

Students succeed.

If I had to distill Sue's message into a soundbite it would be this:

People with disabilities deserve an ordinary life.

Life with their family.  

Life with a significant other when they grow up.  

Life with a good education so that you can have the means to have an ordinary job.

A full, ordinary life.

That's all she wants --

and yet, it's revolutionary in so many places.

This week-end I had the privilege of hearing Sue speak

and advocate

and share her vision.

She was stern.

Indicting all parents who let their child with special needs have poor behavior.

She was funny.

Sharing stories and attempts at searching for this ordinary life for her own daughter.

She was incredibly articulate.

Reminding all of us of how important it is to strive for inclusion and why it matters.

She was bold.

Creating educational models that can be replicated easily and aren't costly, basing it all in research.

****

There, among the crowds of people yesterday, were new parents.  They were holding their tiny babies with Down Syndrome and being washed in acceptance.

It must have felt like a baptism for them.

There were educators who have dedicated their entire lives to the vision of full inclusion...renewing their vows, so to speak, redoubling their efforts, reaffirming just how important this work is.

There were parents who hold close Sue's vision too.

Clinging to her every word.

Spontaneously clapping.

Crying silent tears in agreement and urgency.

There is no time to waste.

And then there was my crew...

mothers of children with Down Syndrome who know in their souls and hearts that the efforts to fully include children with disabilities in Catholic schools is a sacred mission divinely guided.

We were from mostly California...

Napa, Davis, Manhattan Beach, Sacramento, Roseville, Costa Mesa.

But we had friends from Arizona.

And a mom from St. Louis, Missouri who out of desperation formed a Facebook group a year ago that has grown and ricocheted across all sorts of places and created a tidal wave of energy with it.

It was a shout into the void.

And people answered.

She jumped on a plane to be with her tribe and it was right.

Exactly right.

Thrilling.

For both nights that we ate out as a group,

a child with Down Syndrome that was unknown to us came up to our group...

two different kids

hugging us,

reminding us, 

encouraging us in our mission.

My friend, Michelle, called it a "God-cident".

It was like a sprinkle of fairy dust.

Or the slightest whisper of love.

Or the sparkling rocks that guide your way on a dark path.

Any way you describe it, those children felt heaven-sent.

As I watched Sue, 

I thought of these mothers who have no formal program, 

who have nobody funding it, 

no real guidance -- except each other --

who only have the very same desire that Sue has...

a chance for an ordinary life for their child with Down Syndrome, 

learning alongside of his/her siblings, 

making Communion and Reconciliation and Confirmation in their faith community,

singing in the Christmas pageant, 

playing kickball and basketball

just like anybody else.

On my way down Jamboree Road in Newport Beach, a song came on the radio.

I was all alone when I heard these words:

To be humble, to be kind.

It is the giving of the peace in your mind.

To a stranger, To a friend

To give in such a way that it has no end.

We are Love.

We are One.

We are how we treat each other when the day is done.

We are Peace.

We are War.

We are how we treat each other and Nothing More.

Another whisper...another arrow pointing the way.

How we treat each other and nothing more.

Let us remember the heroes,

unsung, 

humble and kind,

who show us how to treat each other

and nothing more.

For us, those heroes have names:

Patrick, Chris, Gretchen, Thomas, CJ, Raymond, John Michael and Adam.

Mia, Savannah, KC and Roberta.

They want an ordinary life.

They are full of ordinary grace.

It is our job to make it happen.

Let's do it.

Our revolution is under way.

Join us.

Salt Water

"The cure for anything is salt water: sweat, tears or the sea."

--Isak Dinesen

For the last few days, this has been my view.  That isn't enhanced.  It isn't altered in anyway.  It was taken with an Iphone and the glory was captured in miniature...but the beauty is so stunning, it comes shining through without effort.

I'm at the beach.

I was born in Pensacola, Florida.  

As far as I can tell, I spent only a couple of years there and then moved around to various locales in Iowa, Illinois and finally California with my family growing up.  I attended college in California's central valley and have lived pretty much right around there my entire adult life...but I've always had a tug, a strong one thats just keeps getting stronger, pulling me like a magnet, to the ocean.

I've always loved the ocean -- enjoyed our honeymoon in Bermuda -- but never could explain its magic.

It was calming, soothing, refreshing, invigorating, beautiful but most especially healing.

When Patrick was sick with leukemia, he had 60+ days of no detectable white blood cells.

He was not hospitalized but he was house bound.

He could be around no one.

He was isolated and by association so was I.

At first it was no big deal...I wandered around with Patrick in my car and would find empty parks.  Zip him out of his car seat, let him swing and play by himself, and hop back in.  Usually that effort would wear him out and he would nap, I'd listen to music and I would muse on the starvation of the soul without connection to others.

I became acutely aware of the poison of solitary confinement.

I related to castaways alone on an island.

I felt imprisoned when truly the only prison was in my mind.

And then I stumbled on an idea...I could take Patrick to the beach.

While the other two were in school, I would pack a picnic, drive an hour and a half and head to a lonely strip of sand with Patrick.

The sea gulls would be our welcoming committee.

The waves our hometown band.

The sand and shell collecting and castles and other creations would be our distraction from white blood cell counts and the language of leukemia.

It worked.

Like some sort of alternate universe, at the beach, we were healing and whole.

We were refreshed and vitalized.

Baptized in a way.

Over and over again.

Slowly, those 60 days chipped away...Patrick's counts got better and he could be with humanity again.

Most especially, preschool!

We've visited the beach in good health and in celebration many times since.

But, when my mom got diagnosed with lymphoma and didn't want to deal with the horrible news...I headed to the beach.  I put on my same T-shirt, made my same picnic lunch but this time I had a little companion named Caroline and she made the joy of the beach all her own.

I can't explain it's majesty.

I try to think of people who are land bound and have never seen the surf:  

never felt the waves tickle your toes, bury them and reveal them all in one fluid motion.  

I try to imagine never knowing this healing balm but I can't.

I like to think that my beach connection was created at birth, on that panhandle long ago.

All I know is that when I am here...like a marriage, in good times or in bad, in sickness or in health, for richer or poorer, the beach is my steady companion, constant and unyielding, always comforting.

Its rhythm, its cleansing presence, its energy is now a part of me.

I'm getting closer and closer to finding a way...demanding a way... to stay here for bigger and bigger chunks of time.

It will take sweat and tears, I am sure...other gifts of salt water...but I am willing.

My new year's resolution: find new beaches.

I can only smile at the opportunity of 2014 and share my grateful heart.

Life is rich with ordinary magic.

Find yours.